I was 39. I was a devoted stay-at-home mom, schooling my three after-infertility miracle young children, ages 5, 8, and 11. We had been together nearly 24/7, every day of their lives. A week with grandparents a few times, my time in the hospital giving birth to younger siblings, our oldest away for 5 days at camp once, a few hours apart each week in separate Sunday school classes, AWANAS, Bible study, and homeschool co-op classes, this had been the extent of our time apart over the course of their years.
Our health insurance had just started offering chiropractic care, a service I had frequently received in my teens. I had missed having back or neck adjustments over the prior decade, but now that chiropractic was an affordable option again, I had been doing my research and knew who I wanted to go see.
When the familiar symptoms of a migraine hit and stretched on for over a week (hormonal imbalances often triggered migraines lasting 20 or 30 days, so while this 10-day headache was frustrating and debilitating, it was well within my “normal” parameters), I started making phone calls.
The lady I wanted to see had no openings for several days, so when I found a guy with an appointment time free that same morning, the desire for immediate relief exceeded my devotion to my preferred provider, so I took his available slot.
I walked into his office on my own power. I did not take another independent step for nearly a year.
He asked about 30-seconds of my medical history, then asked me to lay down on his treatment table. He took my head in his hands and adjusted my neck one direction. We heard and felt the small pop of the air releasing between vertebra, like when you pop your knuckles, that often happens during a neck adjustment.
Then he rotated my neck the other direction.
No sound. No re-alignment. No relief.
“You are too tense. Just relax. Trust me,” he coaxed, as he held my head in his hands.
A second try. A little more aggressive. A faster thrust. A longer stretch of my neck.
“Wow. You sure are hypermobile,” he commented.
Hypermobile? That was a new term for me. All my life I’ve been flexible, “double jointed” even. I can do cool bendy tricks with my body.
So can my mom. And my daughter. So could my great grandma. No one had ever commented on any medical significance in this trait.As a result of the strokes, deep genetic testing was preformed, and all currently known genetic markers of hypermobility syndromes, like the only variant of EDS linked to vascular fragility and premature rupture, all came back negative. [Further genetic testing may provide additional answers. Advancements have not yet found the gene responsible for whatever I do have, currently labeled as hEDS, meaning I fit the symptomatic criteria, via hypermobility, for one of the 6 or 7 known forms of the hypermobility disorder Ehlers-Danlos Syndrome -Vascular being the only one in the EDS family linked to premature organ rupture and fragile circulatory system – but the gene mutation is not present.]
- 1. He saw the symptom, and without all that medical research yet having been done, it was incumbent on him to act with caution, presuming I might have a genetic condition that would make me more prone to arterial injury and this known potential complication of neck adjustment.
- 2. Knowing what we now know, that I do not have vEDS, that leaves us with the problem that what happened to me could happen to anyone! Remember, I walked into his office having no clue that there was potentially anything of medical concern going on, so even if your issue isn’t hypermobility, there may be another contraindication that you have no idea even exists. The only reason I know that he knew there was a concern with me, is because he happened to comment on what he was seeing at that moment, in a chit-chatty, making conversation to try to relax me, kind of way, a statement no other doctor had ever made it the prior 39 years!
Yes, he was using the medical term to describe his observation. What I didn’t know, what I learned later, from several different doctors and physical therapists, was that the single word hypermobility should have immediately put an end to his adjustment attempt. Three different physical therapists have since told me the exact same phrase, that one of the most basic and very first things they are taught about body mechanics in physical therapy school is, “Never EVER attempt to adjust a hypermobile joint!”
I did not know, but his observation should have been his instantaneous red light!
Tries three and four quickly followed, each successively harder and faster than the times before. I lost count at that point. Four might have been all.
My mom, who was sitting on a chair near my feet, who just about to comment on how rough the adjustment was growing, thinks he tried six times in total. Hypermobile or not, no one’s body is designed to withstand the kind of neck extension she was repeatedly witnessing.
On that final attempt, I felt, and we all heard, a HUGE pop as my cervical spine did finally start to submit to realignment. I looked up into his face with a sigh of relief and immediately commented, “That feels better, but I am so dizzy!”
Just that quickly I grabbed for the edges of the treatment table, where I still lay flat on my back, feeling like I was riding a bucking bronco and would be tossed off at any moment.
“Just don’t fall of my table,” he joked, as he turned his back to reach for his activator, still not being fully satisfied with the level of neck re-alignment he had achieved.
My left leg involuntarily kicked toward the ceiling, as if in indignant reply to his making light of my fear. It landed, flopped off the table, feeling as if it would drag my entire body behind.
Thinking I was responding to his joke, my mom picked up my leg and put it back on the table. Before she released my leg, my left arm flailed, a split second before my right joined in, throwing my body into what looked to be a grand mall seizure.
This is so weird! What’s going on? I stifled a confused giggle and simultaneously fought to control my limbs and keep my breakfast in my tummy.
He spun around and cupped my flailing head in his hands once again. “Look at me!” he frantically shouted.
A grey blankness filled my vision. Misty nothingness replaced where I knew his face should have been. “I can’t look at you!” was my attempted reply, but what came out of my throat was a choking slur of mostly vowel sounds, “Eye at ooc a ooooo.”
My last hazy memory in that office was hearing my mom starting a 911 call…
I do maintain memories of a vivid near death experience that I will share about in its own post.
What I’ve been told was happening here during that time was total unresponsiveness of my unconscious body, an ambulance ride I was not expected to survive, an emergency room who initially presumed they were dealing with a drug overdose, continual vomiting while comatose and emergency intubation to prevent drowning, restraints to keep me from pulling out my many life-stustaining tubes and wires as I became somewhat responsive, 5 1/2 days in an Intensive Care Unit where brain and arterial scans eventually revealed two massive brain bleeds (strokes), in my brain stem and cerebellum, caused by a serious tear in my vertebral artery.
I had to be verbally coached and reminded to breath for several hours, but the intubation tube came out, and restraints came off, around day 3, I believe.
I experienced a milder, 3rd stroke while still in ICU, giving my family quite the scare. That shredded artery worked toward repairing itself, clotted, and threw the clot up into one of my lobes.
My first retained memory of ICU happened on day 4, I think. My mom and husband had been taking turns staying with me around the clock. It was Mom’s shift and it fell to her to explain (AGAIN!) that I was in the hospital because I had suffered “a stroke” (she didn’t even try to explain that it had actually been three stokes by this point, two right on the table and another the previous day).
Poor Mom. She’s confused. Strokes only happen to old people.
The following week in the main hospital neuro unit focused on relearning basic skills like bladder and bowel control, swallowing, and developing enough core strength to sit up, with assistance, in bed. The dizziness was unlike any horror I had ever imagined could even exist. The left side of my body was dead.
My left eye was crossed and paralyzed into pointing at my own nose, meaning vision was so severely double that a few month later, when enough movement had been restored to be down to only 60 degrees out of sync between eyes, my family took me to watch a movie at the theater and I saw two totally separate copies of the big screen, without the images being near enough to even overlap yet.
We did not figure out, for several weeks, that along with legal blindness (doubled vision, severely blurred to the point of not being able to make out the big E on reading charts, devoid of color in my better eye), my left ear was now deaf, too, and the right was muted by 30%. No wonder communication was so challenging, especially when sight, hearing, and touch losses were added to the obvious issues of muscle tone loss preventing clear speech, as well as cognitive word-finding challenges.
After several weeks in a rehab hospital (that my husband had to FIGHT to get me into, twice, since doctors were ready to pack me off to a nursing home to live out the few weeks they expected I might possibly still be able to survive, as a vegetable), three more clot-induced strokes required an ambulance ride back to the regional stroke center, followed by “compassionate care” (not FDA approved, last ditch effort) emergency surgeries.
On Thanksgiving morning, 2011, an amazing doctor placed a heart stent in my vertebral artery to try to stop clotting and prevent further stroking, then went back in for a second surgery to place a second stent later that same morning, as he was very please with the results of the first procedure, but scans showed the damage still extending beyond the scope of just one stent’s ability to cover.
During the post-surgical week of complete hospital bed rest, where I was not allowed to turn my neck in the slightest, some numbness started to dissipate, only to be replaced by excruciating head-to-toe nerve pain on the left side of my body, and the discoveries that both the left side of my jaw (presumed to be from traumatic intubation) and left shoulder (loss of muscle tone needed to hold it in place) had become dislocated.
The week of recovery complete, I was sent back for a few more weeks in rehab to learn to function to my fullest within the confines of my new limitations. I learned wheelchair transfers in and out of vehicles and the restroom, how to shower with all my needed adaptation equipment, dressing myself (ever tried to try shoes one handed?), how to sit up in a dining room chair with arms but no seat belt, how to use utensils and eat with only one semi-functional hand, how to chew and swallow solid foods with a compromised mouth and throat, how to clear my airway or get assistance for help when I choked with every other tiny bite, much work on restoring movement to the paralyzed eye, and endless LAPS and LAPS wildly careening around the therapy gym trying to learn how to use a shopping cart as a make-shift walker. Against doctors strong preference, I was finally sent home in a wheel chair, just starting to use a heavy-duty, seven-wheeled, specialty walker on occasion and with close adult supervision, just before Christmas.
I was in near-full-time therapy even after I was sent home. For the first several weeks, therapists traveled to me, as I was too medically fragile to leave the house. I had a hospital bed in my living room, but only used it for the first night (defying medical experts who said it would be impossible for me to get in and out of my waterbed, a task that remains challenging even now, but I was determined to conquor) and during day time for a couple weeks.
The kids lived about an hour and a half from our home, with my in-laws, for the first eight months – that was perhaps one of the two hardest parts of our entire stroke experience, seeing my babies only on weekends. The other hard part was how stroke impacted our marriage.
God has repaired much in our relationship, and continues to restore now, but having just celebrated our 19th wedding anniversary two months earlier, to becoming special needs caretaker and invalid rather than husband and wife equal partners, was devastating! During the season of about 6-18 months into the recovery process, as more and more severely impaired brain connections rebuilt and I became a very weepy, ANGRY, forgetful, accusatory “mean drunk” (a valid description as it is temporary impairment of the cerebellum, via alcohol, that causes symptoms of “drunkenness” like poor judgement, slurred speech, staggering walk, etc.) we dealt with HOURS of my irrational yelling at Rick:
Every. Single. Night. Months, into years, on end.
I also lost my ability to cry at sad and needed times. Except for any conversation with Rick. Somehow my brain transformed the idea that Rick had always been my “safest person,” into the inability to hold a rational conversation with him, on any subject, even as mundane as the color of the sky, without sobbing hysterically. This went on for about four years.
Tears still don’t come as appropriately or easily as they should, but I can talk with Rick without the constant torrent of leaky eyes and hiccup-y breathing, most days now. For this we are both exceedingly grateful!
Even to this day, laughter is still my default reaction when things are sad, serious, or scary though. The more I love you, the more serious your injury, the more prone I am to laugh long and hard when you are hurt. My family has learned to be gracious in this strange response, for the most part, but as you can imagine, this tendency has led to a myriad of social dilemmas.
During the brain rewiring, angry stage, I asked Rick to leave. By God’s grace, he did not. We held to our vows out of stubborn commitment to the promise we had made to God. There were long stretches of months when it was a grit-our-teeth, physically painful experience to even be civil in public and nearly impossible to be alone in the same room together. There were no romantic notions of love. For several years we didn’t even LIKE each other any more.
The Lord is restoring the years the locusts have eaten. Our marriage will never be the same as what it was before October 25, 2011. It is becoming, and will continue to grow, richer, stronger, more solid, more loving, and yes, even more romantic, than we ever could have imagined. It will never be the same because it is becoming so much more!
Our kids are all in traditional classrooms (the oldest is now in college!) and doing well, academically. Emotionally, every family members was hard-hit by the traumas we survived. Thank you to all the different care providers, of so many different kinds, who have ministered to each member of our shattered family over the years, especially churches, counselors, and friends (like Kathy who has been faithfully helping me relearn to keep house, voluntarily coming to spend a day cleaning and organizing with me, each week or two, for the past six years).
The most commonly asked question is, “Did you sue him?” After many weeks and much council, I became convinced by several friends and family members, especially my amazing Christian hospitalist (doctor overseeing my case and organizing all tests and treatments in my care) at rehab, Monica, that yes, a lawsuit was appropriate and warranted. I came to understand that this was the method our government has set in place to provide for my million and a half dollar anticipated lifetime medical needs (remember, this was still when doctor were anticipating my longest possible survival would be well less than two years).
So we met with a personal injury attorney and set the wheels in progress, only to encounter two major issues. 1. He did not carry insurance (most state do not require malpractice insurance for chiropractors, so he had opted out of his). 2. He left the country, thus U.S. jurisdiction.
That was the end of any hope for financial restitution.Since Jennifer’s chiropractor carried no insurance and moved out of the country soon after the accident (thus avoiding any legal or financial consequences), if you would like to help contribute to the Saake (pronounced like the two small words, say and key) family’s massive financial needs (medical expenses alone were initially estimated to cost between $1- and $1.5- Million in Jennifer’s lifetime, but since she has already well outlived the life expectancy she was given, could easily grow much higher), please visit Jennifer Saake’s Stroke Survivor GoFundMe Page. (This support information has been added in direct response to several reader requests.) The Saakes sincerely thank you for your prayers and if God prompts and equips you to send any monetary assistance as well, this is a significant added blessing.
Selling tires up in Canada now, he is no longer practicing chiropractic. Legally he could have moved back to Reno after just 12 months and my statute of limitations would have been expired, so he technically had the right to begin practicing chiropractic here once again, at that point. While I had no legal recourse as far as financial compensation, I did file a complaint with the Nevada state chiropractic board and his Nevada license was permanently revoked. He could still apply for a license in any of the other 49 starts in this country, or in any other, but my guess is that watching my stoking face, watching that left eye migrate into its locked position against my nose, is a sight that lives on in his nightmares and will prevent him from ever again preforming a neck manipulation.
If he ever reads this post, what I want him to know is that Jesus Christ, the one and only God in flesh, knowing I was beyond restitution, loved me so much that He purposefully died in order to bring me in a right relationship with Himself. Does this mean all these realities didn’t happen, don’t still impact our lives? No. It means that if God has forgiven me at such great cost, I have no right to do less, to hold this against you, to wish for you any less than the same eternity God has purchased, by His very blood, for you. As my daughter put it simply, the unforgivable has been forgiven.
I still don’t have the cognitive function or quick reflexes needed to safely drive, so no license yet, though this is one of my long-term hopes. I still use a cane when out in crowds. I still rely on regular water aerobics to maintain muscle tone and function (I hit physical regression and symptom relapse within as little as one or two missed classes).
But I am seriously hoping that the book I had just started writing a week before my strokes, Harvesting Hope From Heartache, will finally be ready for publication yet this year. I’m involved in many activities such as my church’s prayer team (am I ever a believer in what we free God to do through our prayers, after all the prayers I know were prayed for me!) and will be starting a Christian writing group here in Reno, Nevada this week. (If you are a local writer, message me on facebook or email Strokie Gal AT gmail Dot com – no spaces and change the appropriate words to symbols – for information on weekly Life Writer meetings, starting this Friday at 1.)
Life is different, but dawn is rising and I’m learning to sing (metaphorically, my voice is still reeling from stoke damage, in case you are trying that sentence in the literal/physical sense) again.
There is so much more I could share about my personal experiences those first two months, or the six+ years since, but this post is already quite long.
Instead, let me leave you with a few links:
- Statement from the American Heart Association/American Stroke Association, concerning strokes and cervical manipulative therapy (CMT), that concludes, in part, “Cervical artery dissections (CDs) are among the most common causes of stroke in young and middle-aged adults.”
- Chiropractic’s Dirty Secret: Neck Manipulation and Strokes stating, “Chiropractors would like you to believe that the incidence of stroke following neck manipulation is extremely small. Speculations exist that the risk of a serious complication due to neck manipulation are somewhere between one in 40,000 and one in 10 million manipulations. No one really knows, however, because (a) there has been little systematic study of its frequency; (b) the largest malpractice insurers won’t reveal how many cases they know about; and (c) a large majority of cases that medical doctors see are not reported in scientific journals…” [For example, my story was never reported for any legal or medical statistical collection, due to privacy laws!]
Sadly, the general mindset of many (most?) chiropractors is that there is no risk, that any association between CMT and stroke is a myth. (Seriously, do your own search on “chiropractic stoke” and you will find the word “myth” tied to it a LOT. Hmmm – I guess I just imagined my life and my family’s world being turned upside down because of neck manipulation then???) This video arrogantly explains an adjustment from the chiropractic perspective (assuring you why it is so safe and telling you all the reasons why it is the patient’s fault and not possibly the manipulation that causes a stroke) and goes so far as to say any link between an adjustment of the neck and stroke is just another “urban legend.”
According to the, now inactive, Chiropractic Stroke Awareness Group web page, “1-to-3 people each working day in the United States have a stroke caused by chiropractic, or 260-to-780 people each year, or 2,600-to-7,800 per decade.” Having talked with thousands of stroke victims, hundreds stroking during or immediately following chiropractic adjustment, and understanding first hand why accurate statistics are not easily obtained, I tend to believe these numbers, collected by a group of patients interactive with other patients, to be fairly accurate.
So no, chiropractic stroke it is not terribly common, but not surprisingly uncommon either, literally an every day occurrence. When you become that “one,” the fact that it does sometimes happen, whether it is one in 5 or 10 million, or 1 in 20 (as one estimation I read speculated) or 40 thousand, becomes much more pertinent than the being comforted by the low likelihood!
More videos telling similar stories of vertebral dissection leading to stroke after a chiropractic adjustment, sometimes even with fatal endings, are documented on the Chiropractic Stroke channel on Youtube, including actor Kevin Sorbo’s (stroked after a chiropractic adjustment, while staring as Hercules in the t.v. series) story. Last year model Katie May died and the coroner’s report directly stated her death was due to stroke via chiropractic neck adjustment! (I didn’t add any links only because of where she modeled, but if you really want to know, her story is an easy search.)
Leave me a comment please (but play nice and don’t spam, please – last time I posted this story, I got slammed by a few chiropractors and their fans – remember, I was once a fan too – and flooded with a whole bunch of herbalists claims to cure stroke). Yes, the comment box exists, you just need to scroll down a bit to find it. 😉